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Monday, 7 June 2010

Party and holidays - 'normal' life stuff

Well long time no blog as they say...! Loads to write about and it'll probably all come out in a jumble tonight, so apologies in advance for that!

Had lots going on since my last post - namely a 5th birthday Princess party for Tamsin and a family holiday with friends to France, but also a visit from our Early Years Autism Specialist - more on that later.

The birthday party went pretty well (amazing what money can buy... just glad Tamsin has decided she's too old to love pink now after and not before it!). Sasha was amazingly well behaved that day, despite not having her usual lunchtime nap. In fact I'd go as far as to say she was generally better behaved than lots of others her age - she joined in with the party games with all the other children and had lots of fun, sat still for some tea and didn't even mind that she didn't get to blow out the candles on the birthday cake (her favourite thing ever!) - she only cried right at the end when she was really tired. Which is of course great news, but at the same time it makes things more difficult. I can totally understand how anyone else seeing her on that day would wonder what I'm talking about when I say she's a challenge, and probably wouldn't even believe the diagnosis we have. That worries me though, because as much as I'd like her to be totally 'cured', this isn't something that she will just grow out of, and I need her to get the help she needs for starting school and not just be written off as 'she's not that bad' or 'she's very mildly affected'. A teacher who has 29 other children to deal with will not have the time and patience to help with Sasha's understanding all the time.

So many people lately keep telling me how much she's improving, and things like 'oh I can understand her much better now', and 'she's so intelligent' etc etc, but as much as they mean well, it is almost as if they are trying to point out to me that she doesn't have a problem or that it/she's getting better. But nobody else spends as much time with her as me, and of course I can see the improvements for myself - but I can also see the times that are not going so well, her distress at unusual things, and the widening gap between Sasha and her peers. A couple of weeks ago I asked Sasha to put the rubbish from her fruit bar (see she does eat some healthy things ;) ) into a bin when we were out somewhere, and I was amazed when she did actually look at me, think about it and then go and follow my instruction. But most (almost) 3 year olds would be doing this routinely for some time already - and it's not Sasha being naughty not doing it, it is just the lack of understanding. Sometimes the difficult thing is remembering to ask her to do things rather than just clearing up after her, as when you're being ignored for so long it does wear you down a bit! And of course just because she's done it for me once, doesn't mean she will again anytime soon.

Another example is when I took Tamsin to Irish dancing tonight, and Sasha took her shoes off and wanted to stay in the room and do dancing too. Tamsin has a friend there who has a sister the same age as Sasha, who does already join in the classes with her older sister. But I just couldn't leave Sasha in there as she would maybe join in for the first 5 minutes but she would then most probably want to carry on doing her own thing, definitely not sitting quietly if she was asked, and quite likely curling up into a ball on the floor and not moving if she was remonstrated with. I can just imagine all the others dancing over her now! If I stayed in the class it would be no better as she would just look to me to do it with her and get bored fairly quickly anyhow. But the other girl her age is perfectly capable of following instructions, and understands when it is not acceptable to disrupt a class like that. There's another little sister at school who is already doing ballet lessons - something which Tamsin also started shortly after her 3rd birthday. I can't imagine when or if I'll be able to leave Sasha at an organised session like those which Tamsin has enjoyed - which makes me feel extremely grateful to nursery for the break! I do try to banish all thoughts of how the future might be, but even dealing with these little disappointments as we go along now, and all the tidying up after Sasha and managing daily situations does make me extremely tired a lot of the time.

Today I took Sasha to the Splash park, a great free facility in St.Albans which involves lots of water spouts and general good fun. It highlighted a big difference in my girls to me - Sasha was quite happy to wander off into it on her own, and smile/chatter at others her own age (although not actually play or join in with) whilst amusing herself. Tamsin was always clinging to my legs at this age, and wouldn't have been anywhere out of my sight. In fact she's still pretty much like that now, won't say boo to a goose and needs other children to make the first move to say hello usually! Sasha has shown me how nice it is to have a more independent child in some ways - but then unfortunately because of how she is, I do need to stand and watch.I have been considering trying to get an appointment with a specialist at Ormond Street, as I know a couple of others have done. Not that I think she doesn't have autism, just that it'd be good to understand her specific problems and needs rather than sling her under an all-encompassing umbrella. So we'll see - maybe when life quietens down a bit! Anyhow back to today - it did take a turn downhill when Sasha decided she wanted an orange lolly, but the only one they had was the push-up (Calippo style) one. As these are too cold and hard to push up instantly, and difficult for little ones to do anyway, the having to hold it and wait was too much for her and the mood instantly changed so back off home we went. Again something you could explain to other children her age and they would get over more quickly. Ho hum.

Just come back from a week away at some gites in France with friends who had other children similar ages. We had a really lovely time, didn't do much at all so really quite relaxing. Not sure the fact that Sasha had her DVD playing a lot of the time went down that well with the other parents, as their children all wanted to come in and watch!! But that's something I do have to let go, as it does calm Sasha down when she feels she needs it. Interestingly, Tamsin is not really that fussed when the telly /DVD is on anymore, she's quite happy to let it go in the background and get on with her own thing. So anyhow hols were great, and again Sasha was on great form most of the time, so I can see those who didn't know her so well wondering what the issue was. Guess I should be grateful that there seem to have been so many great times lately - just makes me a little anxious waiting for the next run of mood swings. Think it's a bit like the growth spurts that other children have - difficult to time! The flights went relatively well and I was very pleased that the extra £58 for Speedy Boarding paid off both times - we were actually first on the plane home! Sasha was really good for take-off and the flight itself, but obviously didn't like landing at all either time, and I had to pull her onto my lap to calm her down before she did herself an injury both times. Being tired probably didn't help, so I can only hope that situation gets better as she gets older.

Really must stop here tonight as it's turned into an epic.. so more to come on the Autism Specialist visit in my next post. We did have some good news in that we have been awarded the DLA for Sasha, which we will be able to put towards speech therapy.. more on that next time too. Oh and I've still got the water and Rice Krispies to write about, bet you can't wait ;)

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What is Autism?

'Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism have difficulties with everyday social interaction'.What is PDA (Pathological Demand Avoidance)?

Pathological Demand Avoidance (PDA) is one of several Autistic Spectrum Conditions (also known as ASD, Autistic Spectrum Disorder). The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control.

Children may sometimes be described as having 'challenging' or 'oppositional' behaviour. Parents describe life as 'walking on eggshells' and their child as 'Jekyll and Hyde'.